All about Xeloda
Comments
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Renee,
Have you been doing the baking soda and water rinse? That is the only advise that I have received. There are more powerful options if your sore is fungal in origin, but obviously, that would take a medical professional to determine. That must be incredibly annoying and painful!
*susan*
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Susan I am ashamed to say I haven't. I was smooth sailing on SE issue and I got cocky. Better late than never right? Can you tell me how much baking soda to water? How gross is it?
Thanks so much
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As I recall, 1 tsp per 8 oz of water. It is not as gross as you might think. I never measured that precisely. The baking soda dissolves better in warm water. Do yourself a favor and buy a fresh box just for this purpose. Older boxes collect smells and tastes pretty quickly.
*susan*
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Renee, I don't have mouth sores on Xeloda, but I had them something awful on Afinitor--I'm so sorry you're dealing with theses, they are no fun at all!
For my Afinitor sores, my onc called in a prescription for something called "magic mouthwash" that was both soothing and numbing. I also used Oragel's mouthsore gel which was also numbing and helped a lot. The baking soda was soothing for a short while (apparently it's the acids in your mouth that make the sores so painful) but I was faithful about using it and still got a mouthful of sores so don't beat yourself up about not doing that to start with! I also used a toddler toothbrush and bubblegum toothpaste since I kept jabbing them with my bigger brush and the mint really hurt. In the end, I had to go off the Afinitor for a few days and that did the trick even after I started back up again.
Definitely call your onc, though, since the mouthwash is a prescription and also in case her or she feels you should take a few days longer from your schedule to heal up.
Good luck!
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Renee, I was just going to ask about mouth sores, too! Mine are across my lower lip. they hurt and look ghastly. Any advice, anyone? - Vivian
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Hi girls. I guess no need to chime in to Purple and Macy. As you all have said it very well.
Renee, I have gotten a few sores, but on lips, more like a canker sore. They eventually go away. Maybe swishing some salt water? I envy you only having to do 4 pills a day. That was so easy for me. My onc has upped me to 6 pills a day for 2 weeks. I am on day 6 of my week off, and STILL have D. I start back up Monday, I may do 6 pills the first week, and drop down to 5 on the 2nd week. I may even take an extra day off!!!
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thank you! The baking soda and water is helping so much and also the baby ambasil (sp?)
We started out on lowest dose because I don't think I would have been able to deal with SE and work and take care of my kid otherwise but I don't know. I was also training for NYC marathon when I started so it was important the medicine didn't interfere. I'm lucky that I seem to be stable right now. I also had low white blood count on this dose and had to take a break so going higher may not be an option anyway. I feel very fortunate to be on this drug
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Rseman,
I have to warn you that Xeloda and marathon training don't go well together. Capecitabine damage to hands and feet is cumulative, and by the end of the second month it should start showing its effects, and it may be progressive. HFS decreases the life span of cells in the soles of your feet and in the palms of your hands, thus any activity that applies pressure on them, such as walking more than usual for your feet, or simply cutting vegetables for your hands (as somebody reported in this thread), would hasten the effects. Unfortunately HFS is affecting a majority of patients taking this chemotherapy, and is a leading cause for patients having to switch to a different therapy.
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ugh. Well that's good to know because I really want to run Chicago in October and Boston next year. I've been on since October this year and so far no hfs. I can always hope I won't get it but it seems that the reality is otherwise.
I've already switched off one medication because of SEs when it was working and then proceeded to progress for almost a year so I am not going to make that mistake again. It's all about priorities I guess
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Giovanni, great and short explanation of h/f syndrome. I can totally relate to the cutting of veggies. I like to garden and can my veggies. I'm worried about what this garden season will bring for me. I am not on my feet much, but can def. tell that I could not be on them long. I guess they feel worse than they look. My hands, well that's another story!
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Vegetables-- I bought a Breville food processor when I went on Xeloda, and it has absolutely SAVED my hands! Has two bowls, big and small, and several blades. I had a Cuisinart food processor for decades and liked it just fine, but this Breville... dang, I just about love this thing. Highly recommend!
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When I was on Ibrance, I often had coagulated blood in my nose. It was a "listed" side effect on the insert, so no surprise. However, today, I find that my nose is again caked in blood, but my nose never bled. My other surprise is acid reflux. So far, it is fairly mild. I have only experienced this twice before-- during pregnancy and during A/C. Anyone else experiencing these things?
And since my current life requires breakfast, I have discovered that rye bread with a bit of cheese is tolerable first thing in the morning. Today, I made a new batch that should get me through this cycle and the next one.... three pounds of rye bread. The loaves are not perfect but I thought I would share:
*susan*
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Hi Susan,
I had the "crusty blood" in my nose on Ibrance, and now, I have noticed it on xeloda. I just finished my 2nd cycle and am on my off week right now (yay!). I don't have it as much as with Ibrance. I haven't had the acid reflux, but I feel like I'm leading up to it. I feel bloated and feel like burping way more than my usual. I don't feel that way on my off week.
Also, someone else mentioned mouth sores. I use essential oils and when I had mouth sores on Ibrance, I used clove essential oil that seemed to help me quite a bit. I added a few drops to water and gargled it, and sometimes would put it directly on my mouth sores. It didn't taste great, but I felt like it helped the sores.
Susan, your bread looks great! Fresh bread is so delicious!
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Susan, your bread is gorgeous! I need to make some. During my "on" weeks, breakfast is harder than it ought to be.
Groovywilma, I am kinda glad to hear someone else mention feeling bloated (not glad you feel that way, of course, just glad to know maybe I'm not imagining it). Some days I can't believe my belly. I always wonder if it's partly from Xeloda. I have definitely gained weight these past couple of years!
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Groovy and Lulu
I started gaining weight on GDC0810 and am still-hate that! And my stomach looks bloated so much of the time! I thought it was just me.
Thanks for sharing
Babs
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Susan, your bread is beautiful! (I made baguettes last night but was too skimpy with the slits and they came out kind of misshapen, your loaves are so lovely and the brotforms in the background and your kitchen in the background make the whole picture look so warm and cozy!)
I definitely look and feel a little bloated, too, especially on those "on" weeks. I didn't really feel reflux, just nauseous, but taking Prilosec daily (nurse practitioner's recommendation) has really turned that around, so I wonder if that wasn't caused by acid issues, too?
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Susan, the bread looks scrumpcious! I do not have heart burn, nor blood in my nose. For the heartburn, I would highly recommend Zypan. My husband has been using Omeprazole for many years. Just recently tried Zypan with no other meds and he has not had any heartburn. It's a supplement, not a drug.
I also do not feel bloated, I guess I should be grateful for that! I actually lost a little bit of weight during my last cycle, but it was due to the increase in my dose and all the D I had. Suppose to start back up this morning, but I think I will wait until tonight.
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Susan,
Your bread looks yummy! Sorry you are having acid reflex. I now need to take Prilosec as well as Zantac first thing in the morning before eating, plus Zantac at night (mine is worse now that they have me on a temporary steroid). Whatever you take for the reflex, make sure you have it before eating. Once I started the Prilosec first thing in the morning before eating, I stopped throwing up my small dinner at night (previously threw it up 3 nights in a row). Hope you feel better soon!
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I just had my first pet/ct scan after starting Xeloda and it's good news. MSUV value down to 2.5 (from 3.?). This is after 5 cycles of 4 pills a day, 14/7. Good news I think. I don't have any side effects probably due to only 4 pills a day. Maybe we hit the sweet spot of just enough Xeloda to shrink things, but not enough to be sick.
The only thing that showed up on the scan was metabolic activity in my throat and jaws probably from yakking too much with the technician. Somehow this really strikes me as funny as I AM a big talker. Yikes! Lesson: mum's the word before your scan. Or sign language. Oh, then my fingers would light up.
I feel so bad for all of you who are having so many side effects. My onc seems to think the lower dose is ok, and it sure isn't because I'm a little old thing. Quite the contrary.
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Winning - that's great news!
Babs
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Winning, congratulations on excellent news!
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Wanted to share my great news-Xeloda is working for me. For the first time since I was dx with MBC my TM's went down-14 points down.
I'm sooooo happy! Wishing the same for everyone!!!!
Babs
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Babs,
Yahooooooooo!!!!!!!
*susan*
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hey everyone,
Just wanted fo chime in!
Not up for running marathon, but the X marathon is still on.. 52. Cycle..
Bloated I am, tired I am, dealing with heartburn I am, yet also alive with hair still I am
TMs were on the rise for the last few months (in fact skyrocketed) but my rockstar MO kept her cool attitude.. Neither of us dug deep in what was going on in me.. Helped! I got a new hobby selling stuff which took my mind away from any worries.. Now TMs halted and stable..
Guess letting things in their natural flow with the right balance of medical tech worked for me. Hope to keep my chemo options & hair as long as possible
Hey, hope you all can catch me in the X marathon! Hugs
Ebr
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Hello All,
I'm meeting with the nurse practitioner tomorrow to receive my "training" for taking Xeloda. I will be on the 14/7 day cycle, taking 1000mg twice a day. I read all the information I could find and having been reading this discussion group from the beginning. Can anyone give me a heads up on what to expect? What are the most common side effects and do they go away or are we stuck with them until we stop taking the meds? How does the 14/7 day cycle compare to the 7/7 day cycle? Are the side effects less severe?
Highhopes
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Thank you Susan!
Bab
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WSF, Babs and Ebr......great news. Let Madame X continue to provide all of us many days and years ahead.
High Hopes...
I'm meeting with the nurse practitioner tomorrow to receive my "training" for taking Xeloda. I will be on the 14/7 day cycle, taking 1000mg twice a day. I read all the information I could find and having been reading this discussion group from the beginning. Can anyone give me a heads up on what to expect? That would be 2 pills in the morning/2 at night. Should be pretty easy to deal with.
What are the most common side effects and do they go away or are we stuck with them until we stop taking the meds? Hand/Foot syndrome (HFS), nausea, bloating, heart burn, mouth sores, fatigue, diarrhea. During the week off, they let up some. I have personally have not had heart burn, or bloating. I am currently on 6 pills a day.
How does the 14/7 day cycle compare to the 7/7 day cycle? I did that for a few weeks and TM's went up. I am back on 14/7 schedule. Are the side effects less severe? They were for me.
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Goldie0827 - Thanks for the information. I am going to expect the worse but hope for the best with the SEs. Thanks again.
Highhopes
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Side effects were really bad with my first cycle, but then got much easier. However, I do find they are cumulative. I've had over 60 cycles now, and while some cycles are easier than others (who knows why? I wish I did!), I do find that overall the fatigue is steadily more profound as time goes on. But then again... you take this stuff and time goes on. Ya know?
And this time of year is the worst. I do better in every way when I can be comfortable outside and get some sunshine. I am more sensitive to cold and heat now, after six years on cancer meds, and of course there's the weakened immune system to consider, so I am bad about hibernating indoors at this point in the winter. At first it seems all cozy and fun, but by the end of January it's wearing thin and not good for my state of mind. Today, it's day five of Xeloda and windy outside, and I am really lagging. I need to get off my bum and do some cut & paste or painting or something -- anything artsy and fun! Wish we could all get together and finger paint, LOL! Hurry, springtime!
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Met with the nurse practitioner this afternoon and being a blonde, I thought I was going to take 2 pills in the morning and evening. Was I wrong, it's 4 pills morning and evening. I asked why - was told the meds are done by body weight. At least that was straighten out.
My new question - has anyone had cataract surgery while on Xeloda? I was told by the nurse practitioner that I can't have the surgery. I have a call into my ophthalmologist to see if that's true and to call my oncologist for the correct answer. Maybe it can be postponed once we see if this protocol is working ( hope it does).
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